10-12-09 Update

I can’t believe it’s been 8 months since I posted. Unfortunately, that’s primarily due to not having much news. In June of this year my former rheumatologist made the decision to deny treatment because of an issue she was having with my insurance company. Little did she know that I work in the industry and that, in fact, I work for my insurance company (Coventry Healthcare) – they got real antsy when I mentioned contractual violations. ;o) But her mistake turned out to be a blessing in disguise, as so often happens. Here in Central Texas, one of the biggest groups is Scott & White, they’re affiliated with A&M Health Science Center, so they get top notch doctors. I wouldn’t have made the switch had I not had an issue with my former doctor, but since I was forced into a corner, I made the leap and I’m glad I did. Scott & White stresses collaborative care, so you get the best of all worlds! I love my new rheumatologist, she’s up on the latest treatments and tests and has actually done more for me in two months than my former rheumatologist did in over a year.

The first thing the new doc said was “let’s run everything again, when a patient fails as many medications as you have, you have to wonder if the diagnosis was correct.” So 8 vials of blood (nope, not joking) and many x-rays later, we were off and running. X-rays have not been showing disease progression, which is common in the earlier stages; they’re just not fine-tuned enough, especially for the small joints like fingers and toes. So when those came back with nothing, the next thing she ordered was an ultrasound of the joints in my hands and feet. The ultrasound told an entirely different story. The radiologist was actually in the room when the tech was working on my toes (and how often can you say that?!) and his reaction was “Oh yeah! You’ve got erosions all through here!” Not really what I wanted to hear, but by the same token, it proved that there was something going on. The ultrasound can also show where there is active inflammation but no erosions yet (erosions are caused by the inflamed joint lining or synovial fluid eating away at the surrounding bone), which means we know what to monitor!

Having those results lets us know how aggressive we need to be in terms of treatment – in other words, pretty aggressive. I’ve been switched to a higher dosage (the highest an RA patient can have) of the chemo medication and I’m now injecting it instead of taking it in pill form. I’ve been having absorption issues for a while, so the hope is that if we by-pass the stomach altogether, the medication might actually be absorbed and do its job. I can tell from the increase in headaches that I’m definitely getting more of the medication in my blood! I’ve also been put back on the steroids, hopefully a short term solution. The next thing to look at is the stomach issues, to see if they’re related. I’ve had them for years but now the thinking is that they may actually be an inflammatory bowel disease that went undetected. Therefore, I’m scheduled for a colonoscopy on Wednesday, the 14th. The gastroenterologist is also going to scope my throat while he’s there, I’ve had some issues swallowing so he said that although it’s “too high” to be his area of expertise, as long as I’m on the table, he’ll take a look and refer me to a specialist if he finds an issue. He’s been warned that I have a tendency to talk in my sleep and has assured me they’ll record me just in case I say something interesting. I really enjoy these new doctors! I like being able to crack jokes and not be looked at like I need a 72-hour hold. Sorry, mental health humor, it comes with the business I’m in :o)

The next exam will be a bone scan for an issue with my left foot. One of the toe joints is causing an issue and there’s some concern that there may be a stress fracture that we just can’t see on x-ray. The doctor injected the joint two weeks ago in the hopes that it was just inflammation and that the shot would help. The only thing the shot did was startle my mom, since it made me go completely white – which I remained for at least a half hour, the time it took to drive from the doctor’s office to pick her up at work. Yeah, that’s a bit painful. I don’t complain often but that one hurt like a mother. It might not have been so bad if she didn’t have to stretch out the deformities first to even find the joint and then got to work getting the needle in what proved to be a very, VERY small area. Wow. Won’t be signing up for one of those again anytime soon! The bone scan isn’t scheduled, I’m waiting to get through this week’s round of fun before moving on to that one!

Hopefully, once all of these exams are completed, we’ll know which way to go with treatments and I’ll be able to get on something relatively quickly. Keep your fingers crossed for me!

02-24-09 Update

Been a while since I’ve written an update! That was intentional, in my January appointment, it was determined that I’ve officially failed the second of the “biologic” drugs, the injections and that I need to be moved to the i.v. infusions. However, the infusions require pre-authorization, so I wanted to be sure there were no glitches before writing anything! The pre-auth process is a tad tedious. It would be anyway, but I’m now covered by the same company that owns the company I work for. They’ve got plenty of preventative measures in place to make sure that employee data isn’t easily accessed, but it makes the process a little more cumbersome than normal.

Finally, last week we received the approval and they immediately scheduled me for three “loading” doses. Infusions are only given on Tuesdays in my doctor’s office – they require a special nurse and she’s only there Tuesdays – so I was lucky to get on today’s schedule. I went today at noon for the first infusion. I’m immensely grateful to the infusion nurse, Nicole. She’s a sweetheart and made the process a lot easier. She called last week to go over everything and answer all of my questions, but she made sure to go over things again today to make sure I hadn’t thought of any other questions. She also provides her patients with her cell and home numbers, so we can get in touch with her if necessary. She had a little trouble finding a vein to start the i.v., which is nothing new for me. Unfortunately, whenever I have labs run, they have to pull the blood from my hands, the veins in my arms just aren’t real swift. I’ve found an amazing number of lab techs are hesitant to use the hands, mainly “because it hurts” – um, yeah, but it’s hurting ME, not them, go figure. I always manage to get the kid that looks so young, I’m half expecting them to bust out the Fisher-Price “My Little Phlebotomist” kit, so I guess the hand is scary when you’re that inexperienced! Nicole tried to avoid the hands but stuck my arm and couldn’t get it, looked for a few more spots and finally had to give in. I thought she was going to cry by the end and it honestly didn’t hurt me that badly, no more so than the original attempt in the arm did! So I ended up with the i.v. in my right hand, which I’m sure will suck more tomorrow as it starts to bruise, but I’m not overly concerned about it.

The doctor came in during the infusion to do my normal exam, which pretty much ended the same way as all exams do – “it’s out of control”. My hands are actually not as bad as they had been, but my feet/toes are ridiculously swollen and deformed. My shoulders and hips are also in on the action. My left shoulder has become so painful that the pressure of my seatbelt is enough to make me want to scream some days. During my January appointment, she went ahead and did a cortisone injection in it, to get it to calm down some. Unfortunately, the relief lasted all of three weeks, which I half expected. She warned me when she did it that because the underlying disease is so out of control, this wasn’t going to be a permanent fix; it would only give me temporary relief. At that point, though, I was willing to go for temporary!!! I would’ve liked to have had my hips done at the same time, but the areas in which I’m experiencing the most pain are inaccessible to her in a normal office setting. I’m a little more reluctant to go through a full outpatient procedure in order to get three weeks’ relief, so I’ll deal with them later.

She’s put me on a different anti-inflammatory medication, one I’ve been on before and have gotten relief from. Not as much relief as with the steroids, but we’re working hard to keep me off of those, they’re just not a long-term solution. I was switched off this med because there was a concern that I was having a very, very minor reaction to it, but I’m willing to take the chance and try it again - the reaction wasn’t even bad enough for me to notice it, it was something that caught the attention of my PCP and made her go “Huh, I wonder…”

The three “loading doses” take place in more rapid succession than my normal doses will. I have my second infusion two weeks from today and my third will be four weeks after that. By mid-April, I’ll have all three on board and will *hopefully* be starting to feel some relief. I’m told it takes at least until that third dose, but sometimes longer, before it starts to really kick in and make a difference. I’m really hoping to be a wunderkind and have it kick in earlier! The disease is really kicking my butt these days, I’m so exhausted and in so much pain. Plus, I’ve been working a lot of overtime, so that’s not helping. The running joke is that I’m incredibly pale and have raccoon eyes because of the dark circles under them. I’ve gotten used to the look, not quite a fashion statement but that’s okay. The doc says that’s all due to the disease being out of control and that once we get some semblance of control, I should start to feel better in that department too. I sure hope so!!!! We’ll know soon enough.

It’s hard to know in the back of my mind that I’m running out of options while also maintaining an optimistic outlook. It’s a struggle every day, but I just keep trying to tell myself this one will be the one that works!! I’ll post another report when I’m a little further into treatment and actually know something. That’s it for now!

12-14-08 Update

Another doctor’s appointment down. Not a whole lot of good news from it, but that’s SOP. My blood tests have shown a little improvement, not much, but a little. So the doctor decided to wean me off the steroids; if doing so doesn’t increase my pain levels too much, that will be one less thing to worry about, what damage they’re doing. Over the next 4-6 weeks, we will be upping the dosage on the chemo drug to about 2.5 times my original dose. She’s doing it gradually to make sure I continue to tolerate the side effects reasonably well. This past Friday was my first dose on the increased dosage and I have to say, the dizziness was spectacular. Imagine being on the Tea Cup ride at Disneyland for about 36 hours straight. It’s a good thing I didn’t have any place to be, even if I could’ve driven myself, I would’ve looked like a raging drunk.

Pain meds were also doubled, which leaves me feeling perpetually hung over. Not sure how functional addicts do it! I’ll be cutting those back down and only upping them when it’s absolutely necessary. As nice as it is to have relief, my job kinda requires the use of my brain, otherwise having hands that don’t hurt is pretty much useless! We discussed doing cortisone injections in one of my hips but I’ll need to get an x-ray of it first, just to be sure there aren’t any other issues going on with it, besides the inflammation. She wants to avoid the injections if possible though, and thankfully the hip has calmed itself down from where it was. I’m not one to call complaining in between appointments, so she knew it was bad when I called her nurse asking what the heck to do! Texas weather is a killer though and going, literally, from setting a record high at 81 degrees one day, to snow the next is not the kind of rollercoaster I like to ride. Although it’s only snowed once, we’ve done the 80 to 50 dance a few times in the last few weeks, and of course, 50 during the day means at or below freezing at night. Not exactly an RA sufferer’s friend, that’s for sure!

For all the bad news though, my hands have shown slight improvement since we started the new meds. I no longer look like I go around punching people all the time – the redness has diminished some. They still get red, but it’s not a constant state of being. The swelling is still just as bad though. Both middle fingers are the worst of the joints on my hands, so our running joke is that I need to stop flipping people off (hey, it’s either make a joke or cry; I choose to joke about it). My toes are pretty nasty though. The members of the Schmutz clan reading this can attest to the fact that none of us were born with particularly pretty toes (another thing I joke about with the doctor), but I think I’m the winner of the ugliest toes contest right now. Two of them are curling so badly that I’m almost walking on the nails (and on really bad days, I AM walking on them). She says it’s due to the fluid in the joints, so hopefully that will correct itself as we get the inflammation down. For now, though, my dream of being a foot model has been put on hold.

That’s pretty much it. I’ve finally finished fall semester, which I thought would never end. I should’ve taken the semester off, but I pushed myself, which I now realize was a mistake. Therefore, I’m not registering for next semester. My hope is with the extra rest and new meds, I will be in a better place to focus on school later on. It hurts to have to put it on hold, but ya gotta do what ya gotta do, right? My next appointment is in January and we’ll reassess then. For now, I’m staying on the every two weeks injections because she didn’t want to change that variable on top of everything else. We’ll see how things go for the next six weeks or so. All of the love and support I’ve gotten has made things easier, so thank you for all the notes and well wishes! Love you guys!

Introduction 11-17-08

As many of you already know, earlier this year, I was diagnosed with Rheumatoid Arthritis. For those that hadn’t heard…surprise! This year has been a long and difficult journey, to put it mildly. To be diagnosed with this disease at such a young age has been tough to swallow. Because of that, it’s been hard to share it with those around me, including family and close friends. I apologize for that. My goal with this blog is to keep everyone who chooses to read it informed on the latest news. I have follow-up appointments with my rheumatologist every 6-8 weeks, so I intend to update it at least that often, if not more.

So many people have heard of RA but don’t know exactly what it is, so I’ll include a little RA primer here. RA is an autoimmune disorder that causes inflammation of the joints. The term autoimmune disorder actually encompasses quite a few diseases, including Lupus, Crohn’s Disease, MS, Addison’s, Grave’s and a host of others. Healthy immune systems are designed to defend the body against infection and disease. The immune system of someone with an autoimmune disorder is programmed differently. Instead of attacking infection and disease, the immune system attacks its own cells. In RA, the immune system attacks the lining of joints, called the synovium, which causes inflammation and swelling. As the disease progresses, it causes damage to the joints and can eventually begin to damage other areas of the body as well, including internal organs. In addition to the damage the disease can do, RA patients also have a higher chance of developing Lymphoma than the general population does. The longer the disease goes uncontrolled, and the higher the severity, the greater the risk of developing Lymphoma. There is no cure for RA. There are treatments, but they all come with a cost. The most common treatments compromise the immune system – in an effort to get it to stop attacking itself, it has to be weakened altogether. Therefore, the risk of infection is extremely high. A common cold becomes cause for concern.

Those are the RA basics, now for my story. In my case, it began with a general feeling of achiness, which I attributed to stress. Unfortunately, I had been complaining to my original primary care physician here in Texas for several years and he blew me off. My mistake was allowing him to brush me off so easily; had I known what that mistake would ultimately cost me, I would’ve stood on my head to get his attention. In late 2006, I found a new doctor and started the process of getting established with her. In the summer of 2007, I started to complain of pain in my hands and feet. That triggered the search for the cause, which eventually led me here. My PCP attempted to manage the symptoms herself, as is common practice, while searching for a cause. My blood tests showed signs of inflammation. At that point, we knew we were looking at something systemic – if it was showing up in blood tests, it wasn’t a localized problem. She referred me to a rheumatologist when she felt that we’d ventured out of her area of expertise. Unfortunately, rheumatologists are difficult to get appointments with. Her first choice was not covered by my insurance at all and her second choice had a three month waiting list. In September 2007, I took the first appointment I could get, which was for late December. In mid-December, my company announced we would be changing insurance carriers, and suddenly her first choice was a possibility. I quickly called and was excited to hear that she had recently left her previous group and had joined another; therefore she didn’t have a waiting list! I made an appointment for January, just as soon as the new insurance kicked in. She sent me off for more tests – blood tests, x-rays, skin biopsies (yes, skin biopsies), and a thyroid ultrasound. Turns out, thyroid disorders and RA have similar symptoms and upon examination, my thyroid was extremely tender to the touch.

Ultimately, it was discovered that I have a mass or nodule on my thyroid. It is solid and large enough to warrant a closer look. A biopsy was done in February – not a procedure I’d like to repeat anytime soon – and it was determined that the mass is benign. It has been re-scanned and while it has not disappeared or even decreased in size, it has also not increased in size and I am considered stable at this point. Of course, it will require regular monitoring, but I was given the all-clear to go a year before it has to be re-checked again. With the biopsy coming back benign and my blood tests showing normal thyroid counts, we were back to RA as the cause of my pain.

The official diagnosis came in March. I was put on steroids at that point, which I promptly had a reaction to. Red rashes are not a good look on me! My medication was changed out to a different form of steroids and I’ve been on them ever since. Taking steroids at high dosages for longer than three months poses its own risks, but it’s a risk we’ve had to take. I was also put on what is called a Disease Modifying Anti-Rheumatic Drug (DMARD). This particular drug can cause vision problems, so it requires special eye tests…of course it does!! At the same time, I was given anti-inflammatory medications to try to bring down some of the inflammation in my joints. Because of the inflammation, on any given day, my joints are bright red, swollen, and hot to the touch. It takes a couple of hours in the morning before I’m able to completely flex everything, because the stiffness creeps in overnight. The week before last was such a miserable week that the stiffness never disappeared. I felt like I had baseball mitts for hands because of the swelling and stiffness.

In June of this year, I was started on something called a Biologic Response Modifier drug. The first of these was an injection given once a week. When it failed, I was switched to another drug in the same class, which is an injection given every other week. That drug is also failing. My next choice is a rather toxic medication that was originally designed as a cancer treatment; in fact, it is widely considered to be the drug that ushered in the age of chemotherapy for cancer treatment. Yes, you read that correctly – chemotherapy. It’s also had great success in treating rheumatoid arthritis though. Because of the toxicity, it will require blood tests every 4 weeks. I have been told, on more than one occasion, that getting pregnant on this medication will result in a 16-headed baby. In fact, if you read the literature, the medication is actually used by some doctors to induce a medical abortion, so the likelihood of even being able to carry a child to term is slim to none, 16 heads or not. It stays in the body even after the treatment is stopped. I’m told you have to be off it for at least 4 months before attempting to get pregnant. However, if it works, once I’m on it, it will be difficult to come back off of it, since it will be the only medication to touch the inflammation. If it doesn’t work, I won’t be capable of caring for a child and the point will be moot.

That’s how severe this disease is. I’m to the point now that I no longer pick up friend’s babies for fear of my hands seizing and the potential for dropping them. I cut my hair short again a couple weeks ago because I can no longer hold a blow dryer long enough to dry long hair. I have difficulty cutting meat and usually resort to having someone do it for me. I drop things easily. I have trouble with bottle caps that are screwed on too tightly. On really bad days, I have trouble undressing after work. To say that the disease causes humiliation is to call Hiroshima a “little bombing” - an understatement, to be sure. It’s frustrating, maddening, frightening, and enlightening at the same time. You learn who your true friends are. You learn your mental strengths. You learn to hide your weaknesses.

As of my last appointment (November 10th), we made the decision to begin the toxic DMARD because it’s believed that my form of RA is too severe to be treated with the regimen I am currently on. The fist full and syringe full of medications I take isn’t enough! My rheumatologist stopped counting at 40 inflamed joints at this last appointment. My body cannot continue to withstand such high levels of inflammation, especially since we don’t know exactly when this began. It’s likely been going on for years, undiagnosed. My toes are already showing signs of deformity, as are several fingers. And there’s that nasty little side effect to worry about – Lymphoma. Additionally, the biologic response modifiers have, according to some literature, increased the likelihood of Lymphoma in some patients. Other literature shows that the increase in Lymphoma is just because of the disease, not due to the medications. Whatever the case, it’s a lingering issue that has to be taken into consideration with every decision – because the longer this goes on, the higher my chances get.

I’m told the first few doses of this new medication are difficult. The side effects are what you would expect from chemo – extreme fatigue, nausea, vomiting, hair loss, etc. Hopefully those will decrease over time, as my body learns to process the medication. I’ve been warned that I may miss some work though, in the first few weeks. Thankfully, it’s a once a week medication, so hopefully the side effects will be contained to the first day or two after taking the meds, not repeated day after day. I took my first dose this past Friday evening and handled it relatively well. I spent most of the weekend in bed, had a horrendous headache, severe dehydration, and the world did seem to be spinning off its axis, but no vomiting, so I’m considering myself to be extremely lucky.

I’ve also been prescribed folic acid to go with this medication, which is supposed to help with the side effects. I’ve already been on 50,000 IUs of Vitamin D a week because my Vitamin D levels were non-existent. Plus daily pain meds, stomach acid reducers because of the steroids, and various other medications. In other words, I’m a walking pharmacy! I do believe I’m single-handedly keeping my local Walgreens in business. The every other week injection alone is $1800 a month. Thank god for insurance!!

So, that’s the saga that has been my RA journey. My next appointment is December 10th (only 4 ½ weeks between appointments this time). I will post another update then, if not before.